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Sister
NBIA organization in Germany makes
major research contributions
At
its November family conference, the German affiliate of the NBIA
Disorders Association made major contributions to advance research
efforts into the disease. The group, Hoffnungsbaum e. V., awarded a
$15,000 grant to a researcher to study deep brain stimulation, and it
sent samples to the NBIA BioBank to aid in studying the disorder. The
research grant, awarded to Dr. Lars Timmermann as primary investigator,
is the first one the German group has ever funded. As an increasing
number of NBIA patients around the world undergo DBS to alleviate their
symptoms, the group agreed it was important to collect data and compare
the outcomes. The results will provide valuable information to others
considering this therapy. With
organizational help from NBIA Disorders Association Board Member Matthew
Hodgson, the group collected 22 blood samples from nine NBIA patients
and family members. The samples went to the NBIA BioBank in Wisconsin.
The group is grateful to Dr. Eric Johnson, vice president of Prevention
Genetics, the company storing our samples, and Dr. Kevin Rostasy,
a newly appointed member of Hoffnungsbaum’s Medical Advisory Board,
for assisting with the collections.
Rostasy drew the blood, and Johnson handled the logistics. Rostasy,
an experienced neuropediatrician who is starting a new job at a hospital
in Innsbruck, Austria in March, is one of three medical professionals
named to Hoffnungsbaum’s Medical Advisory Board at the conference.
Other new advisory board members named at the conference were Dr. Susan
Hayflick of the Oregon Health & Science University and Dr. Thomas
Meitinger, Director of the Institute of Human Genetics at the GSF -
National Research Center for Environment and Health in Munich. The
Third German NBIA Family Conference attracted 58 people, including 11
NBIA families from Germany. It was our biggest conference ever and
included sessions not unlike the ones held in the states. Attending
physical therapists reported on their work with children who have the
PKAN form of NBIA. That prompted a discussion on the pluses and minuses
of physical therapy when a patient has dystonia. Sessions
also were on legislation affecting the rights of the disabled, nursing
care insurance, disability living allowance, tax relief for the disabled
and other issues. |
